For those of you that have not followed my story ‘Paul, diagnosed yesterday, about to start KRD’ under in ‘Member Introductions / Personal Stories’, I would encourage you to take a look there for details on how things progressed for me from prognosis to midway through induction therapy.
To summarize:
I saw my general practitioner for back pain in early October of 2016. X-ray tests revealed that the pain was caused by a lytic lesion on my right 7th rib.
I started seeing a local oncologist in the Houston Bay Area in late October who made an initial diagnosis of multiple myeloma.
I was referred to a myeloma specialist at MD Anderson in Houston in early December. After the usual testing (blood tests, bone marrow biopsies, PET scan, full skeletal survey) I was diagnosed with early Stage II multiple myeloma in late December. Most of my blood and urine test results were normal or nearly normal, indicating that this was caught early on. Key multiple myeloma indicators were:
o M-Spike of 1.1 g/dL (11 g/l)
o Kappa free light chain of 25.9 mg/dL
o Kappa-lambda ratio of 41.82
o IgG of 1644 mg/dL
o Bence-Jones protein count of 310 mg/day
o Presence of the lytic rib lesion, which the PET scan showed to be very active
I began induction therapy in late January, which consisted of KRD – Revlimid (25 mg daily taken orally) and Kyprolis (58 mg) and dexamethasone (20 mg) taken via IV twice weekly for 3 weeks with a week off after that. I was also put on Valtrex (valacyclovir) (500 mg daily) as a precaution against infections. I was able to do my induction therapy locally at the MD Anderson Bay Area Annex, right across the street from Johnson Space Center where I work, which saved me from 1.5 hour round trips up to the MDA main campus in the Houston Medical Center area.
Midway through the 1st cycle, I had a port implanted because of issues I have with being a ‘hard stick’ with deep and rolling veins requiring multiple attempts to find a vein for each blood draw or IV treatment. This was one of the best decisions I have made during this process – It is a major contributor to my peace of mind.
I did three cycles of treatment. Side effects were relatively minimal. I experienced significant fatigue that would start 1-3 days after my infusion therapy sessions, then gradually improve until the next round of therapy. I also experienced constipation, which was successfully managed with over the counter Duralax. Test results showing improvements throughout the treatment. After the 3rd cycle:
o M-Spike from 1.1 to less than 0.5 g/dL
o Kappa free light chain from 25.9 to 2.2 mg/dL
o Kappa-lambda ratio from 41.82 to 3.19
o IgG from 1644 to 438 mg/dL
o Bence-Jones Protein count from 310 to 28 mg/day
I am now doing a week of maintenance consisting of Revlimid and dexamethasone, then we won’t do any treatment as we prepare for my stem cell harvest in mid-May, followed by the transplant procedure in early June. We are planning to do the transplant as outpatient, so I will be renting an apartment close to MD Anderson for the duration of the procedure and the follow-up testing. Once the stem cells have engrafted, I should be able to do the rest of my post-transplant isolation at home in the Houston Clear Lake area.
Forums
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul J's initial treatment & stem cell transplant story
Thank you, Paul, for sharing your initial treatment and cell transplant experiences with members of the Beacon community.
For others reading this who may be new to the Beacon forum, you should know that there are a number of other forum threads that chronicle the stem cell transplant experiences of Beacon community members. There is a list of these "transplant journal" threads at the end of this Beacon forum posting:
"Useful links to existing forum discussions"
in the section labeled
"Stem Cell Transplant Experiences of Beacon Forum Members"
Note that this "Useful links" posting is always listed as the first discussion thread in the "Treatments & Side Effects" section of the forum.
There also is a link to the "Useful links" posting in the sidebar that appears on every page of the forum. It's the last link in the part of the sidebar titled "Forum Discussions - View By Specific Subject".
For others reading this who may be new to the Beacon forum, you should know that there are a number of other forum threads that chronicle the stem cell transplant experiences of Beacon community members. There is a list of these "transplant journal" threads at the end of this Beacon forum posting:
"Useful links to existing forum discussions"
in the section labeled
"Stem Cell Transplant Experiences of Beacon Forum Members"
Note that this "Useful links" posting is always listed as the first discussion thread in the "Treatments & Side Effects" section of the forum.
There also is a link to the "Useful links" posting in the sidebar that appears on every page of the forum. It's the last link in the part of the sidebar titled "Forum Discussions - View By Specific Subject".
Re: Paul J's initial treatment & stem cell transplant story
I fell out of the habit of posting updates a while back because my induction reatments started getting repetitive and un-newsworthy. I did three months of relatively low dosage (as far as I can tell) KRD treatments (Kyprolis 58 mg, dex 20 mg and Zofran 8 mg via IV twice a week; Revlimid 25 mg orally daily) which finished up in April. I followed up the induction treatment with a week of maintenance consisting of Revlimid and dexamethasone orally.
After two weeks, we started the pre-collection testing. The next time we met with my myeloma specialist, she told us that the latest test results continued to look good, but she did see a slight uptick in some of the numbers:
- We are still waiting on the latest M-Spike results
- Kappa free light chain from 2.2 to 2.9 mg/dL
- Kappa-lambda ratio from 3.19 to 5.03
- IgG from 438 to 525 mg/dL
The changes were very small, in the noise level, but given that we were not planning to do the transplant procedure until June after my son’s high school graduation, she recommended that we do a cycle of KRD maintenance treatment and increase the Kyprolis dosage to 76 mg twice a week ‘to keep things pounded flat.’ We agreed and I started this cycle on May 4. I am finishing this treatment up today.
As a result of the additional maintenance cycle, we have slipped the stem cell collection and transplant to mid-June.
After two weeks, we started the pre-collection testing. The next time we met with my myeloma specialist, she told us that the latest test results continued to look good, but she did see a slight uptick in some of the numbers:
- We are still waiting on the latest M-Spike results
- Kappa free light chain from 2.2 to 2.9 mg/dL
- Kappa-lambda ratio from 3.19 to 5.03
- IgG from 438 to 525 mg/dL
The changes were very small, in the noise level, but given that we were not planning to do the transplant procedure until June after my son’s high school graduation, she recommended that we do a cycle of KRD maintenance treatment and increase the Kyprolis dosage to 76 mg twice a week ‘to keep things pounded flat.’ We agreed and I started this cycle on May 4. I am finishing this treatment up today.
As a result of the additional maintenance cycle, we have slipped the stem cell collection and transplant to mid-June.
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul J's initial treatment & stem cell transplant story
I haven't had much information to update since the end of my Kyprolis, Revlimid, and dexamethasone (KRD) induction therapy on May 31, but now that my son has graduated from high school (congratulations, Nate!), we are moving on with the next phase of my treatment.
This week, we accomplished a round of testing (blood testing, electrocardiograph and chest X-ray) on Monday and met with the transplant team for the first time to discuss the results and plans going forward. The tests results were excellent, so we proceeded to have a dual CVC line inserted and my port-a-cath removed on Tuesday. This was a bit of a challenge. It took 4 tries to get the new line inserted, 3 unsuccessful attempts subscapular (?) before a successful attempt via the jugular. On a side note, I decided to only have Versed (midazolam) for these procedures so that I could do both the CVC insertion and port removal in one session.
I started Neupogen shots yesterday and will continue them through Monday, when we have more testing and another consult scheduled to see if we are in good shape for starting stem cell collection.
I decided to go in early this morning for my Neupogen shot so that I could have my CVC line flushed and the dressing replaced; it had started to itch over night. A good thing I did, since one of the lines was clotted (unrelated to the itch). The nurse was able to take care of it without any trouble, but I'm glad I decided to come in.
This week, we accomplished a round of testing (blood testing, electrocardiograph and chest X-ray) on Monday and met with the transplant team for the first time to discuss the results and plans going forward. The tests results were excellent, so we proceeded to have a dual CVC line inserted and my port-a-cath removed on Tuesday. This was a bit of a challenge. It took 4 tries to get the new line inserted, 3 unsuccessful attempts subscapular (?) before a successful attempt via the jugular. On a side note, I decided to only have Versed (midazolam) for these procedures so that I could do both the CVC insertion and port removal in one session.
I started Neupogen shots yesterday and will continue them through Monday, when we have more testing and another consult scheduled to see if we are in good shape for starting stem cell collection.
I decided to go in early this morning for my Neupogen shot so that I could have my CVC line flushed and the dressing replaced; it had started to itch over night. A good thing I did, since one of the lines was clotted (unrelated to the itch). The nurse was able to take care of it without any trouble, but I'm glad I decided to come in.
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul J's initial treatment & stem cell transplant story
Hi Paul. Feel free to look up my multiple myeloma story, which is very similar to yours. (Here's my introduction.) I will do testing for a transplant next week. Following you, and a few others, to learn and prepare. Thank you for sharing. Congrats to you and your son on the graduation!
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Paul J's initial treatment & stem cell transplant story
Thanks, Hopeful1! Best of luck to you, too!
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul J's initial treatment & stem cell transplant story
I am really happy to pass along some great news this morning. We are done with the stem cell collection phase of my treatment!
After 3 grueling days of collection that were complicated with clotting issues in the CVC lines that slowed things up on Tuesday, we got the news this morning that we have collected 8.8 million cells, more than the 8 million goal!
I also had some minor issues with low magnesium and calcium that resulted in some tingling in my lips and fingertips, but the treatment team resolved these issues without any drama.
We are now heading into the next step, which will be the transplant itself. Friday we will replace the dual CVC line with a single line and then have a full day of testing to make sure I am physically ready to press on, then we have consultations to discuss the test results on Monday, chemo treatment on Tuesday, and transplant on Thursday.
We are really excited to be moving forward!
After 3 grueling days of collection that were complicated with clotting issues in the CVC lines that slowed things up on Tuesday, we got the news this morning that we have collected 8.8 million cells, more than the 8 million goal!
I also had some minor issues with low magnesium and calcium that resulted in some tingling in my lips and fingertips, but the treatment team resolved these issues without any drama.
We are now heading into the next step, which will be the transplant itself. Friday we will replace the dual CVC line with a single line and then have a full day of testing to make sure I am physically ready to press on, then we have consultations to discuss the test results on Monday, chemo treatment on Tuesday, and transplant on Thursday.
We are really excited to be moving forward!
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul J's initial treatment & stem cell transplant story
Hi Paul,
Wow! Moving right along. Blessing for a continued smooth journey. That's a lot of cells!
Wow! Moving right along. Blessing for a continued smooth journey. That's a lot of cells!
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Paul J's initial treatment & stem cell transplant story
Great news. It is a relief to get the stem cell harvest done. Good luck forward with the melphalan and the transplant. I am on Day +6. Not feeling very energetic, but I haven't had any bad effects to date, so I consider that relatively good news. Of course, it gets harder to celebrate things when your white blood counts and neutrophils are low. I think the worst part has been the anticipation that things are going to be terrible. Maybe I will be pleasantly disappointed.
Keep excited Paul, it's all for the best of causes: you.
Keep excited Paul, it's all for the best of causes: you.
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Colin - Name: Colin Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 60
Re: Paul J's initial treatment & stem cell transplant story
Colin And Paul,
I thought I would just say good luck to both of you. I am at Day+11. For the most part, diarrhea has been the biggest issue. It was tested for C. diff and it was negative, I get medications for it, but they just calm it down and make it tolerable. My platelets really dropped and I had two days of platelet infusion. They've come back up. I tanked with my WBC being 0.1 three days ago. Its been there since with no increase. Doctors have assured me that by tomorrow i should see an improvement.
Food doesn't look good at all. I was given a diet pamphlet on what to eat while having diarrhea.
My doctors and nurses are the best. We have to use these medicated body wipes 1 hour after showering. And use a tablet called clotrimazole to protect the mouth from sores. These tablets really hit the stomach in a bad way, making me feel nausea.
Overall just trying to get through this. And pray that my WBC starts to increase.
Best of luck to you both.
George
I thought I would just say good luck to both of you. I am at Day+11. For the most part, diarrhea has been the biggest issue. It was tested for C. diff and it was negative, I get medications for it, but they just calm it down and make it tolerable. My platelets really dropped and I had two days of platelet infusion. They've come back up. I tanked with my WBC being 0.1 three days ago. Its been there since with no increase. Doctors have assured me that by tomorrow i should see an improvement.
Food doesn't look good at all. I was given a diet pamphlet on what to eat while having diarrhea.
My doctors and nurses are the best. We have to use these medicated body wipes 1 hour after showering. And use a tablet called clotrimazole to protect the mouth from sores. These tablets really hit the stomach in a bad way, making me feel nausea.
Overall just trying to get through this. And pray that my WBC starts to increase.
Best of luck to you both.
George
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
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